Person:

Altman, Micah

On September 24-25, 2013, the Privacy Tools for Sharing Research Data project at Harvard University held a workshop titled "Integrating Approaches to Privacy across the Research Data Lifecycle." Over forty leading experts in computer science, statistics, law, policy, and social science research convened to discuss the state of the art in data privacy research. The resulting conversations centered on the emerging tools and approaches from the participants’ various disciplines and how they should be integrated in the context of real-world use cases that involve the management of confidential research data.

Researchers are increasingly obtaining data from social networking websites, publicly-placed sensors, government records and other public sources. Much of this information appears public, at least to first impressions, and it is capable of being used in research for a wide variety of purposes with seemingly minimal legal restrictions. The insights about human behaviors we may gain from research that uses this data are promising. However, members of the research community are questioning the ethics of these practices, and at the heart of the matter are some difficult questions about the boundaries between public and private information. This workshop report, the second in a series, identifies selected questions and explores issues around the meaning of “public” in the context of using data about individuals for research purposes.

Emerging large-scale data sources hold tremendous potential for new scientific research into human biology, behaviors, and relationships. At the same time, big data research presents privacy and ethical challenges that the current regulatory framework is ill-suited to address. In light of the immense value of large-scale research data, the central question moving forward is not whether such data should be made available for research, but rather how the benefits can be captured in a way that respects fundamental principles of ethics and privacy.

In response, this Essay outlines elements of a new ethical framework for big data research. It argues that oversight should aim to provide universal coverage of human subjects research, regardless of funding source, across all stages of the information lifecycle. New definitions and standards should be developed based on a modern understanding of privacy science and the expectations of research subjects. In addition, researchers and review boards should be encouraged to incorporate systematic risk-benefit assessments and new procedural and technological solutions from the wide range of interventions that are available. Finally, oversight mechanisms and the safeguards implemented should be tailored to the intended uses, benefits, threats, harms, and vulnerabilities associated with a specific research activity.

Development of a new ethical framework with these elements should be the product of a dynamic multistakeholder process that is designed to capture the latest scientific understanding of privacy, analytical methods, available safeguards, community and social norms, and best practices for research ethics as they evolve over time. Such a framework would support big data utilization and help harness the value of big data in a sustainable and trust-building manner.